ArticleBMC palliative care2015
'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.
Article in BMC palliative care, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.Journal of intellectual disability research : JIDR · 2025Pooled it
- Advance care planning in people with intellectual disabilities, more than 'to resuscitate or not to resuscitate': A qualitative interview study with general practitioners and family caregivers.The European journal of general practice · 2026Article
- Aging people with intellectual disabilities in need of care: challenges, strategies, and consequences for special housing in Germany.International journal of developmental disabilities · 2026Article
- Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.Palliative medicine · 2023Review
- Improving palliative care for people with intellectual disability: a self-assessment of policies, practices and competencies in care services.BMC palliative care · 2023Article
- Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.Journal of applied research in intellectual disabilities : JARID · 2021Article
- The Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS II): Optimization and Further Validation.Journal of Alzheimer's disease : JAD · 2021Article
- Use of dementia care mapping in the care for older people with intellectual disabilities: A mixed-method study.Journal of applied research in intellectual disabilities : JARID · 2021Article
- Effects of Dementia Care Mapping on job satisfaction and caring skills of staff caring for older people with intellectual disabilities: A quasi-experimental study.Journal of applied research in intellectual disabilities : JARID · 2019Article
- Children with intellectual disability and hospice utilization.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2017Article
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundProfessionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts.
methodsA qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis.
resultsFive shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between 'two families': relatives and care staff. Six relational values were behind these shifts: 'being there' for the person with ID, 'being responsive' to the person's needs, 'reflection' on their own emotions and caring relationships, 'attentiveness' to the ID person's wishes and expressions of distress, 'responsibility' for taking joint decisions in the best interests of the person, and 'openness to cooperation and sharing' the care with others.
conclusionsEnd-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.
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